Patisiran for amyloidosis
Deputy Ryan urges access to patisiran for amyloidosis patients and asks that the Minister act for people such as a Newbridge constituent. The Taoiseach says new medicines must follow statutory approval procedures but promises to monitor progress closely.
On page 46 of the programme for Government, it states there will be an increased focus on rare diseases. In response to a parliamentary question in June relating to the licensing of the drug patisiran for the treatment of amyloidosis, the Minister for Health, Deputy Donnelly, stated that once negotiations between the HSE and the manufacturer are complete, the drug will be formally considered by the HSE drugs group.
Thousands of people have signed an online petition calling on the Minister, Deputy Donnelly, to provide patisiran to patients, including Mr. Pat Tinsley, who is from Newbridge. People living with amyloidosis fear for their lives and although patisiran may be costly, we cannot put a price on life. As late as yesterday I got more paperwork indicating that this is not going to happen any time soon. When will the Taoiseach and the Minister, Deputy Donnelly, do something about this, please?
Comment on this
I thank the Deputy for raising this matter. Substantial additional funding was provided in the budget to deal with approval of new medicines, but there are procedures through which those medicines must be approved. That is enshrined in legislation that was passed by these Houses. Those procedures must be followed. We will keep a very close eye on this and ensure these matters are progressed as quickly as possible. I understand, in the context of rare diseases, that orphan drugs are very often the only lifeline for people in alleviating the distress that such conditions can cause. I will look into this and speak to the Minister about it.